What All Autism Parents Need
By Shannon Des Roc... on January 31, 2014
BlogHer Original Post
To be a parent is to be frustrated. I think we can all agree on that. Or can we?
Well then, how about this: I am a parent, and I am frequently frustrated by stereotypes that all parents like me -- that is, all parents of autistic children -- agree on what being an autism parent is like. Because, oh my goodness, like any other diverse community, we do not agree. So I am confused at best when I see stories or articles about what all autism families need, and what all our lives are like -- because our experiences are varied, and all our voices count. Individually.
That's why it's frustrating to watch videos like autism parent Emily Colson's, below. She seems like a lovely and sincere person, and she is trying her very hardest to send out a positive message about autistic people like her adult son -- exactly the kind of "heartwarming" messages that tend to get shared and shared again on social media. But when Ms. Colson talks about how autism families really need other families to reach out and include them, that makes me feel like she's asking non-autism families to view all autism families as charity cases. Her message makes me feel icky.
I'd much rather Ms. Colson felt comfortable relying on her own personal experience, and has used such statements as, "I always wished other people would invite us," or, "I want other people to try to understand my son so they can be more accepting." Those are the kind of personal perspectives that get other people asking questions instead of making assumptions. I'd much rather hear, "I saw this video, and she said that she wishes people would call her more. Do you wish people would call you more?" than, "I'm calling you because Emily Colson said autism families feel isolated."
I don't mean to be too harsh towards Ms. Colson, as I suspect we have a lot in common. But I put a lot of my efforts here at BlogHer and also at Thinking Person's Guide to Autism into debunking autism myths, assumptions, and generalizations. Asking people to listen to individual voices -- Autistic voices and parent voices -- and keeping in mind that we need to respect individual experiences with autism as long as those experiences are themselves communicated in a respectful manner.
It's not always easy to maintain respect when autism parents discuss autism. Many parents have a difficult time accepting that autistic people read and participate in social media conversations, or that negative statements about the autism so many Autistics consider part of their identity are hurtful. Whereas I believe that I should not write anything about my son that I would not want him to read, not all parents agree. I believe that autistic people are the ultimate autism authorities, with insights no professional or other parent could possibly provide; other parents feel that deference to Autistic voices somehow negates theirs. And these gaps lead to misunderstandings, as parent Jennifer Myers writes:
"Sometimes people in the online-world think that [my autistic son] Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today." I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles."
I really do enjoy reading perspectives from other autism parents as long as they are personal, respectful, and avoid generalizations that sweep me and my family into a baskets we didn't make ourselves. I'll leave you with a few things I want people to know about me, as an autism parent:
Sure, I like my family to be included. But not because you feel sorry for us. Leo is awesome, and we are awesome, why should anyone feel sorry for us?
If you're the kind of person who wants to be there for us if we need help, please do let me know. I'm won't ask unless we're really, really desperate, so I promise it will not be a terrible inconvenience. And I will offer to reciprocate.
If you have an autism-specific question, ask. I'm usually happy to answer, if I'm able. If I'm not, I'll direct you to folks who will.
I get upset when people speak about Leo in front of Leo as though he is not there and cannot understand. So it's probably not cool to ask those autism-specific questions in front of Leo.
There are a lot of things we don't do as a family because Leo isn't into them. There are a lot of things we don't do as a family because other family members aren't into them, either.
Don't assume anything that's hard in my life is about autism. To be a parent is to be frustrated, after all.
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